Three weeks ago, Charlie had surgery to (install? No, not the right word) place a Gastronomy tube (from here on out, the button). It was not a decision we took lightly but in hindsight, it’s one we should have made much, much sooner. It’s only been a few weeks, but already, this is a very different life we’re living. Mostly because we’re actually living. I’ve gotten out of the house more in the last weeks than I had in all the months prior. I no longer feel trapped. And I no longer feel guilty. The NG tube changed Charlie – it made him anxious and unhappy. It made us feel terrible, but we didn’t know what else to do, and with all the voices in the medical and therapeutic community assuring us he’d just *get* eating one day, we felt hasty and selfish moving to a more permanent solution. He hated that thing. I hated that thing. It was an anchor that kept me tied to the house, to my baby (whom I love most ardently) and to feelings of frustration and exhaustion.
Surgery wasn’t easy (here’s an “directly after” picture, for those who won’t be put off by a bit of ick). The few days following, just a cough or a sneeze could shock his little body with pain and that was very hard to watch, to know I’d caused, or at the very least, allowed it. I wondered if we’d been selfish. I did not wonder that for long. His recovery and return to happy, relaxed, easy going Charlie was quick and life changing.
We leave the house to take adventures. I have taken on a freelance gig – a small but crucial step toward normalcy for me. I’ve found reasons to put on mascara and use the blow dryer. Yes, he eats through a hole in his belly. That’s not exactly normal. But it works. So well. And as an added bonus, I get to see my son’s face, without all the tubes and tape. And god, it is such a beautiful face.
Happy for you Fish. I’m sure it was an extremely difficult decision and time for all of you. Love his smile!
Heather,
I wouldn’t say that Charlie’s button isn’t exactly normal…it is just a “new” normal, for now.
I’ve been thinking and praying and sending goooood baby-grow mojo since your last update. I’m glad that this has given you a bit of relief, and has helped Charlie!
I am sorry your baby had to have such bad owies but I am also so very glad to read you guys are all adjusting very, very well to tubie-life!
ps- I hope you don’t question yourself for long! We all do what feels best for the child in the moment based on what we know and what we are being told. Some decisions are so much tougher than others and hindsight can just be a mean old ass-kicker. You are a fantastic Momma!!
Long time reader and have never commented but want you to know I’m thinking of you and happy you and Charlie are doing better. Also- have you checked out hello bee blogger Mrs. Tiger? Her son, I believe, has a G tube, and she may be helpful.
YAY!! So happy to hear that you all are living a little better now! That sweet sweet face makes everything worth it!
It IS a beautiful face. That is one good-looking baby! Prayed that everything would end up okay and for some return to normalcy for the little guy and glad to see that things are getting better
What fantastic news, Heather! So relieved that you have found a solution that works and lets you enjoy this time with Charlie. He is utterly adorable and looks up for any adventure you can conceive! Good job.
All good news. You and the DL followed medical advice, protocols, etc. etc. The reality of life w/nasal feeding, cranky baby, stressed parents, etc., didn’t enter into their decision making. No point beating yourself up over not going this sooner. I’m so glad you 3 are now living your lives rather than just getting through each day. He’s still adorable, btw! Some things never change.
so, so, SO very happy for you all. i can’t even imagine what it’s been like for you, nor just how liberating this “button” is and will be.
like so many things in parenting, you do the best you can! and as someone said, the sanity of the parents is not to be under-rated!
enjoy being a mama with a wonderful baby and husband.
Oh how this post warms my heart! I’ve had your fmaily in my prayers and I’m just grateful today and on so many levels. Kudos Mama! Kudos Dada! What a difference I see the photos that you so graciously share.
Im very happy for all of you.
Stay well and I look forward to the next post.
Cheers!
I’m so very happy to hear your good news. It’s so much easier for us to hear “after the fact” when things have settled down and your Charlie is doing so well. Wishing you all the best….
I am so happy for you that things are getting better! You have a baby that is eating! And, he’s not miserable while eating!
I agree with Jerilynn that this is just a “new normal.”
And, Charlie is still so adorable! What is he going to be for Halloween?
I don’t know you personally but I cried reading this… I’m so happy to hear that life is looking up.. Please keep us updated!
P.S. Happy Halloween to you and your sweet Charlie!
That beautiful little guy. Love his face.
I am so happy for you and your adorable Charlie that you have had a check mark in the “win” column. You and your family deserve double plus check marks (highest possible grade on a general assignment in my favorite, and most difficult, English class in high school). Positive thoughts flow your way from northern WI.
Would it be uncouth to make an Easy Button joke?
SO happy things are better. You are incredibly tough, and this return to normalcy is SO deserved. Cheers to all the adventures you two/three are enjoying!
Ha!! Not at all. Easy button it is.
Yay for buttons! I’m not able to say what I want to say, so I’ll just say I’ve been thinking of you three and wishing things would get better.
Don’t hold back!
I just meant i lack the words in English, but essentially it is: sad, worried, hoping, hoping, hoping and happy/ releived for you three!
Excellent news!
Your family had been on my mind, and I am glad to hear of these improvements. Wishing you all the very best! N.
Yeah for Easy Buttons! And even more for living a life instead of getting through it.
So so happy for you! Being a parent is SO hard, on so many levels, and that’s when your baby is sleeping all night and eating and pooping like normal! You guys have been through so much and I’m thankful that you are finally getting a glimpse of “normalcy” and are able to do life again. It must be a huge relief that he is growing and otherwise healthy and back to his happy self. So happy that this seems to be working for your little guy
Hi,
I have literally lurked on your site almost since the beginning and have often thought to write, but never felt it “necessary” but, in reading the last few months, now felt it might be? I don’t want to write it all out here (too long and too much) but, if you want to send me a quick email I have some people I was thinking about connecting you with – and, if it makes it feel less “creepy” – you and I have some people in common, which, along with having read you for so long is also why I bizarrely think I sort of know you (though I know I really don’t). Completely up to you and I absolutely understand if you don’t email – time, energy, emotional energy – but, wanted to at least offer. And, from everything I have seen you are a great mom and it is tough to be one.
Wow, congratulations Heather… Married and a mum now, a far cry from those days at L.S.D.
Sorry to hear about your son’s surgery, maybe I can help, these days I help people with their medical problems with simple, natural and freely available means, feel free to contact me if you’d like an alternative approach.
Dave.
Are you implying Fish used to drop acid????
Hi Heather
it’s been a while since I’ve been on here and…wow! Major life changes. Sounds like big kudos are in order because I don’t know how I would have handled what you and Dork Lord and Charlie are going through. I’m cheering you on from afar (and wishing I were close enough to squeeze a baby roll or cheek).